Tuesday, 27 March 2018

#NoCureAlwaysHope

Dear Readers,

On Friday my husband and I attended my quarterly clinic at the Royal Brompton Hospital.

I have been feeling very unwell in the last few months, but I am slowly getting better and back on the Macitentan. I had switched to a different drug, but it wasn't for me anymore. Now Macitentan gave me dire side effects of migraines and sickness, but hopefully this time round they won't be as bad and my body will get used to them quicker.

My 6 minute walk test went well and the results hadn't changed, so that's good. Also, my ECHO showed exactly the same without any deterioration, so again good news. Overall my appointment was very positive and I am stable!

On another positive note, I have been reissued my blue badge after failing to get it renewed after my first assessment!

As you know Pulmonary Hypertension can be seen as an invisible illness, where we have good days and bad days. Unfortunately for an assessment, we need to have a "bad day" to show how bad PH does affect our daily lives. When losing something so vital as a blue badge, it feels like we have lost our freedom to go out and about. That is why I will continue to raise awareness and get the condition of Pulmonary Hypertension known to the public.

Pulmonary Hypertension is a degenerative heart and lung condition. People don't understand how serious we actually are! One day I'll have my double lung & heart transplant as that is my only cure. Anyway, I am lucky to have the support from my husband, mum and close friends. They really do build me back up when life goes a bit rubbish! They will always be there for me to make sure I continue living life to the full, despite having this condition!